COMMUNITIES DELIVER UNAIDS AND STOP AIDS ALLIANCE 2015 REFERENCE THE CRITICAL ROLE OF COMMUNITIES IN REACHING GLOBAL TARGETS TO END THE AIDS EPIDEMIC

Transcription

1 UNAIDS AND STOP AIDS ALLIANCE 2015 REFERENCE COMMUNITIES DELIVER THE CRITICAL ROLE OF COMMUNITIES IN REACHING GLOBAL TARGETS TO END THE AIDS EPIDEMIC Communities deliver 1

2

3 CONTENTS Executive summary Introduction and overview The impact of community responses to HIV Community responses to HIV: four main components Advocacy, campaigning and participation in accountability Illustrative examples of community-based advocacy, campaigning and participation in accountability Community-based service delivery HIV and other health service delivery Service provision for key populations Service provision by faith-based organizations Services for orphans and other children made vulnerable due to AIDS Services to address gender-based violence and inequalities Services to address self-stigma among people living with HIV Community-based research Illustrative examples of community-based research Community-based financing Illustrative examples of community-based financing Recommendations for future directions in community-based HIV responses References Investing in community responses Abbreviations

4 EXECUTIVE SUMMARY Communities were the first responders to HIV three decades ago, and they remain essential in advocating for a robust response to the epidemic, delivering services that can reach everyone in need and tackling HIV-related stigma and discrimination. Working alongside public health and other systems, community responses are critical to the success and sustainability of the global response to HIV. There is now wide recognition that community responses must play an increasing role in addressing the epidemic in the years ahead. The Strategic Investment Framework, published in 2011, identifies community responses as a critical enabler of service delivery. The Joint United Nations Programme on HIV/AIDS (UNAIDS) has estimated that to achieve bold HIV treatment and prevention targets set in 2014, investments in community mobilization and services must increase more than threefold between 2015 and 2020 (1). Much of the critically important work in making progress in the response to HIV and implementing a Fast-Track approach that lies ahead including broadening the reach of services, supporting retention in care, increasing demand, monitoring quality, advancing human rights and combatting stigma and discrimination can only be achieved with a strong community voice and presence. This report draws on multiple sources to document the many ways in which communities are advancing the response to AIDS, and the evidence for the effectiveness of these responses. Core areas of community-based activities include advocacy, service provision, communitybased research and financing; each of these areas is illustrated by examples of communitybased actions. A World Bank study of HIV service delivery from 2010 to 2012 found that community-based efforts are a cornerstone of the response to AIDS and represent substantial value relative to financial investment in the sector (2). Studies from countries as diverse as Cambodia, South Africa, the United Republic of Tanzania and Zimbabwe point to the effectiveness and costefficiency of community-based HIV services. Numerous studies from around the world document the success of community health workers in enhancing the reach, uptake and quality of HIV services. Community-based services play varying roles in different settings. They often support public health systems by filling critical gaps: they work effectively with marginalized populations, provide supportive services that buttress clinic-based care or extend the reach of health services into the community. There are also many examples of community-based services achieving substantial scale in service delivery on their own. For example, in Uganda, The AIDS Support Organization (TASO) has reached over people with HIV treatment and other services (3). Like every sector involved in the response to the AIDS epidemic, the role of the community is evolving with developments in research, and with changing trends in funding and the social and political context. While the core functions of the community response remain essential, community systems are being challenged to adapt to changing service models and demands from funders. Too many once-vibrant community-based organizations (CBOs) are now struggling with severe financial challenges, and many have already closed their doors. 4 UNAIDS and Stop AIDS Alliance

5 New opportunities for supporting community responses are emerging through the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) and other funders, but there remains a critical need for strategic investment in the community sector donors and implementing country governments. Beyond increased funding for essential services, greater investments in community systems strengthening (CSS) are needed to establish stable and sustainable responses for the years ahead. Whether they are advocates, providers, clients, participants in research or researchers themselves, community members remain the foundation of the AIDS response. The goal of ending the AIDS epidemic as a public health threat by 2030 depends on transformed health systems that include significantly scaled-up community responses and the funding and sustained support to make these responses possible. Communities deliver 5

6 INTRODUCTION AND OVERVIEW Communities have been at the forefront of responses to HIV since the start of the epidemic. Over 30 years of action have resulted in substantial achievement communities have played a crucial role in reaching people with treatment, prevention, care and support, advancing human rights and reducing gender inequalities. Successes and remaining challenges in the global response The AIDS epidemic is being addressed successfully in many countries. We are now seeing declines in new HIV infection rates and AIDS-related deaths, and people living with HIV are living longer and have better quality of life. Community mobilization has been key to achieving this substantial scale-up and improvement. Yet many challenges remain. While there have been significant successes during more than 30 years of action, epidemics are increasing in some countries, and there are substantial disparities in prevalence, scale of national responses and access among different population groups. Furthermore, human rights violations and harmful gender norms continue to limit the effectiveness of responses to HIV. Greater access to treatment, prevention, care and support is not available or accessible to all population groups, and it has not reached the same levels of scale-up in all countries and regions (4). Also, not all services have been equally scaled up. For example, harm reduction programmes remain unavailable in some countries where unsafe injecting practices play a key role in the local HIV epidemic: only 80 of the 158 countries reporting injecting drug use indicate that they offer opioid substitution therapy (5). As of March 2015, only 15 million people were accessing antiretroviral therapy (ART), while the estimated number of people living with HIV by the end of 2015 was 36.9 million. The quality, scale and availability of sustainable funding for services are not the only remaining challenges. For example, gender inequalities faced by young women in sub-saharan Africa and stigma and discrimination faced by people living with HIV in other key populations 1 globally remain key in denying access to or deterring people from seeking vital services. Accessibility of available services is particularly difficult when faced with discrimination within the community or from those who provide services. In addition, legal and sociopolitical environments such as punitive laws 2 or abusive law enforcement continue to obstruct effective access to and delivery of services that leave no one behind. 1 Key populations, or key populations at higher risk, are groups of people who are more likely to be exposed to HIV or to transmit it, and whose engagement is critical to a successful HIV response. In all countries, key populations include people living with HIV. In most settings, men who have sex with men, transgender people, people who inject drugs and sex workers and their clients are at higher risk of exposure to HIV than other groups. However, each country should define the specific populations that are key to their epidemic and response, based on the epidemiological and social context. 2 Laws providing for overly broad criminalization of HIV non-disclosure, exposure and transmission, or punitive laws related to key populations (particularly men who have sex with men, sex workers and people who use drugs). 6 UNAIDS and Stop AIDS Alliance

7 To end the AIDS epidemic community responses to HIV must be integral to the global response Social and biomedical advances have yielded remarkable results: we have better, improved tools for screening, diagnostics and treatment monitoring. There also are more and better prevention options, including clarity and guidance on the strategic use of antiretroviral therapy. We have the necessary tools and we know what works and what doesn t. We know that criminalizing, excluding, violating rights and discriminating against communities or groups of individuals does not help the HIV response; in fact it hinders it. We also know that responses to HIV can be entry points for responding to broader issues of health and development for example, health systems strengthening (HSS), addressing human rights, providing sexual and reproductive health and rights, challenging social norms regarding gender equality and changing societal attitudes towards marginalized population groups. Overcoming the challenges to achieve full scale of key services that reach everyone and leave no one behind can only be realized with resourced community responses to HIV that are integrated into national and global plans and actions. To end the AIDS epidemic by 2030, we need transformative action that identifies and scales up responses that: are rights-based, of good quality and equitable; transform prohibitive legal, political and societal environments into enabling contexts that empower individuals and communities, do not discriminate and leave no one behind; strengthen health and community systems to deliver a sustainable response to HIV and other health and social justice and development issues; and prove to be evidence-informed, effective and appropriate to the communities they aim to reach. We know that community responses to HIV are the cornerstone of effective, equitable and sustainable programmes. They mobilize communities to demand services and exercise their rights; they also deliver services, support health systems and reach those most vulnerable to HIV where state facilities cannot. Moreover, communities act as barometers in their watchdog role, tracking what works and what does not with a local, contextualized perspective. In other words, communities give a voice to those who need services, provide feedback as to whether policies and programmes are working and suggest how they can be improved. It is essential that community responses are integrated into the overall response linking effectively with health-care systems and embedding community activities into a wider context to transform the AIDS response in the post-2015 development agenda. We need to learn from what works in the community responses to HIV and scale them up. We also need to resource these activities and create a long-term strategy for sustaining them. Purpose of this report This report synthesizes published findings to date that demonstrate that community-based responses to AIDS: generate positive health and development outcomes in some cases more positive outcomes than those responses delivered by states or other facilities. In many contexts, community-based responses have also been shown to be key in strengthening health systems; work to safeguard the rights of those they reach and serve; Communities deliver 7

8 mobilize communities, including marginalized, socially excluded and criminalized population groups groups that often are not the primary focus of government or private sector provision, or who may be poorly reached; improve the quality, equity and scale of national responses through their participation in accountability and coordination mechanisms; mobilize communities and service providers, building on a sense of shared responsibility and solidarity around issues of health and social justice; bring programmes to scale when there are sufficient investments both in the programmes themselves and the capacity to build and sustain them; and pioneer innovative approaches that build ownership and leadership in communities. Governments, civil society organizations, development agencies and other stakeholders can use this report to: support the better inclusion of community responses in national planning and funding, including Concept Notes to the New Funding Model of the Global Fund; make the investment case that community responses to HIV must be well-resourced and understood as being core to domestic and international funding; make the case that transformative community responses are needed to end the AIDS epidemic by This report is the first in a series on community-based responses planned by UNAIDS and its partners. The series will include: practical tools, such as mapping of community-based service delivery; thematic reports on good policy and practice, such as community-based HIV testing and counselling, service delivery by and for key populations, and successful community advocacy strategies; synthesis of evidence and lessons learned, such as trends in investments for civil society at the national level through national plans and Global Fund grants. Limitations of this report This report describes the elements and impact of community responses to HIV, illustrated through some examples of community action. It is not intended to be an exhaustive compilation of all community responses, but simply to articulate briefly the main components of the community response through some real life examples. This report distinguishes between: (1) community (system) responses, (2) community systems, and (3) community systems strengthening (CSS). UNAIDS recognizes that CSS merits further work, and it will collaborate with partners in the future to address this need for guidance and documentation. 8 UNAIDS and Stop AIDS Alliance

9 DEFINITIONS Community response In the context of HIV, a community response is the collective of community-led activities in response to HIV. These activities include: (1) advocacy, campaigning and participation of civil society in decision-making, monitoring and reporting on progress made in delivering HIV responses, (2) direct participation in service delivery, (3) participatory communitybased research and (4) community financing. Community systems There is no singular understanding of community systems. In this report, community systems are defined as community-led structures and mechanisms used by communities that enable community members and CBOs and groups to interact, coordinate and deliver their responses to the challenges and needs affecting their communities. Community systems be from informal and small in scale, or they can be extensive networks of organizations. Community systems should not exist in isolation; rather they should serve as a critical component of the overall system that aims to protect and promote health and human rights. These broader systems include government or public health systems (such as, public health facilities, regulatory and governance bodies, and state-employed health-care professionals). Community systems strengthening CSS promotes the development of informed, capable and coordinated communities and CBOs, groups and structures. In other words, it is the capacity building needed to ensure that community responses can be delivered through community systems. It should reach a broad range of community actors and enable them to contribute to the long-term sustainability of health and other interventions at the community level, including the creation of an enabling and responsive environment in which these contributions can be effective. Communities deliver 9

10 THE IMPACT OF COMMUNITY RESPONSES TO HIV Evidence for the effectiveness of community responses Community action translates into results. It can achieve improved health outcomes, mobilize demand for services, support health systems strengthening, mobilize political leadership, change social attitudes and norms, and create an enabling environment that promotes equal access (Figures 1 and 2). In the response to HIV, like any other response to a development or health challenge, the evidence base is critical. One challenge often stated is that community responses and community mobilization are not easily measurable (6, 7). This is especially challenging now that there is such a strong emphasis on having evidence of effectiveness in order to prioritize limited resources and scale-up community responses with the greatest impact (8, 2). However, this report and numerous other recent research papers highlight how, despite the fact that there is always a need for further evidence, we now have enough evidence to make the investment case for scaling up and speeding up community responses to HIV. Community responses are effective. The World Bank conducted a multi-study evaluation of community responses to HIV from 2010 to 2012 in order to provide robust evidence of community-level results (2). The study involved communities in research, engaged national researchers and AIDS authorities in demonstrating results, and worked closely with civil society to ensure that findings were relevant. The main finding from the study was that the community response is a cornerstone of the response to HIV and that it creates substantial value relative to the initial investment. Figure 1. Community-based services achieve results, examples from Malawi and South Africa 100 MALAWI SOUTH AFRICA Percentage (%) H H With community health workers Without community health workers With community health workers Without community health workers Community health centers Hospital Community health centers Hospital Alive and on antiretroviral therapy Lost to follow-up Alive and on antiretroviral therapy Lost to follow-up Source: Zachariah et al Task shifting in HIV/AIDS: opportunities, challenges and proposed actions for sub-saharan Africa. Transactions of the Royal Society of Tropical Medicine and Hygiene. 2009;103: UNAIDS and Stop AIDS Alliance

11 Community responses work with and complement public systems Community responses to HIV do not exist in isolation from health and social protection systems. Community-based interventions can simultaneously provide the support that community members needs and linking them to the health system. The interventions can work in synergy with the health system to meet demand, especially where the health system does not have capacity (or is unable) to reach populations. These linkages augment community services within the health system, and they provide a social, protective and empowering role, ensuring that a community s rights to health are advanced. Community health-care workers work both within and with health-care systems. Task-shifting and task-sharing, for example, are now a fundamental part of HIV testing and treatment programmes, involving communities in treatment literacy, adherence and even distribution programmes. Community health workers provide services to their communities and act as the link between health systems and communities on health issues such as HIV, sexual and reproductive health and rights, and many others. Evidence from a recent review documenting the role of community health workers demonstrated the wide range of services provided (9). These included patient support (counselling, homebased care, health education, adherence and livelihood support) and health services (screening, referrals and surveillance). Evidence shows that community health workers enhance the reach, uptake and quality of HIV services, as well as the dignity, quality of life and retention in care of people living with HIV. The presence of community health workers in clinics was reported to reduce waiting times, streamline patient flow and workload. Community health workers can be employed by the state health service or by nongovernmental organizations (NGOs), and they provide critical linkages between state-run health systems and community responses. Evidence also shows that integrating legal literacy and legal services into health care is an effective strategy for empowering vulnerable population groups and addressing underlying determinants of health. Legal empowerment programmes have the potential to enhance access to health services, promote accountability, reduce stigma and discrimination, and contribute to altering unjust structures and systems (10-12). Figure 2. Community engagement leads to greater access to treatment and prevention (Increase for each community-based organization created per people, Nigeria and Kenya) 64% increase in the likelihood of treatment access (Nigeria) 2x increase in the likelihood of using prevention services (Nigeria) 4x increase in consistent condom use in the previous 12 months (Kenya) HIV Source:Rodriguez-Garcia R, Bonnel R, Wilson D, N Jie N. Investing in communities achieves results: findings from an evaluation of community responses to HIV and AIDS. Washington DC: World Bank; Communities deliver 11

12 Community responses to HIV promote human rights, equity and quality of services HIV is not just a health issue. HIV touches on all aspects of life it is a social, cultural, political, economic, rights, health and development issue. The synergy between the HIV response and social development is crucial, and community responses to HIV encompass both issues. Community actions are fundamental to combatting stigma, discrimination and raising awareness of HIV and human rights, and for delivering programmes for prevention, treatment, care and support. Community responses achieve scale Community responses span the range of interventions that are needed to respond to HIV, and they can be credited with saving millions of lives worldwide. They can achieve scale by reaching a significant proportion of the communities they serve and by providing a considerable number of services available within a country (Table 1). HIV has disproportionately affected those who are most marginalized, vulnerable and (often) criminalized. The centrality of the community-driven response and efforts to address systemic barriers and institutionalized forms of discrimination are at the heart of the extraordinary nature of the response to HIV. Community responses have demonstrated how they can reach those living at the margins of society, including the criminalized, the oppressed and the stateless. Organic and semi-formal community responses are often better attuned to the needs of diverse communities; by their very nature and composition, these responses are carried out by people who have an intrinsic understanding of community experiences and needs. This allows for a focus on a range of vulnerabilities experienced by communities; ranging from very practical concerns (such as legal aid and welfare support), to advocacy for human rights (including sexual and reproductive health and rights, legal and policy reform), and addressing the longer-term concerns of impact mitigation. Many people affected by HIV and other key affected populations are vulnerable to violence and punitive legal environments. Communities provide consultation and representation services, legal aid services and run rights literacy programmes for people living with HIV and key populations to address discrimination and infringement of their human rights. In many low and middle-income countries where there is no pro bono provision of legal aid by public institutions, these community-based services are often the only legal services available to key populations. Engaging communities in the capacity strengthening of law makers, law enforcement and health-care personnel to redress human rights violations have proven to be effective (13 15). Community responses lead to better policies for greater treatment access The early phases of AIDS activism were marked by campaigns to develop antiretroviral therapy and Fast-Track approval for effective therapies. This energy translated into the successful mobilization of global, regional and national community organizations in a coordinated push for scaling up access to treatments and reducing prices, including pressing for the use of flexibility within the World Trade Organization (WTO) agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS), which helped to make HIV medications affordable in developing countries. The success of community treatment advocacy had a huge impact, including accelerating the availability of generic formulations of HIV medicines, which enhanced competition within the pharmaceutical sector and reduced the cost of treatment in relation to branded medication. 12 UNAIDS and Stop AIDS Alliance

13 Table 1. Examples of community responses to HIV that reach significant proportion of the communities they serve THE CHURCHES HEALTH ASSOCIATION OF ZAMBIA (CHAZ), ZAMBIA The second largest provider of health services in the country. Provides more than 50% of health services in rural areas. Over people living with HIV provided with antiretroviral therapy between 2005 and KHANA, CAMBODIA In 2013, adults and children living with HIV reached. Identified 589 pregnant women living with HIV, 93% of whom were supported to access services to prevent mother-to-child transmission in 2012 and Identified 1753 sero-discordant couples and provided them with a package of services in 2012 and Only six infants were born with HIV during that period, among pregnant women living with HIV receiving services to prevent mother-to-child transmission (< 1%). Reached 1.2 million women living with HIV in nine countries. MOTHERS2MOTHERS, SOUTH AFRICA Frequently implementing the model through existing community-based and faith-based organizations. Trains, empowers and employs thousands of mothers living with HIV as Mentor Mothers. Mentor Mothers advise and support pregnant women living with HIV and accompany them throughthe process of accessing prevention of mother-to-child transmission services. Direct support to over people from key affected populations, in particular people living with HIV, since its inception (3, 16). THE AIDS SUPPORT ORGANIZATION (TASO), UGANDA The largest community-based, NGO providing HIV services in Africa. Over clients provided with antiretroviral therapy since June A thousand children provided with antiretroviral therapy since June Demonstrates the important role of communities in health systems, from education and awareness to direct service provision, and monitoring and holding governments accountable (17). TOPS, MYANMAR Provided clinical services to sex workers and 7100 gay and other men who have sex with men in Communities deliver 13

14 Community responses ensure that limited resource allocations reach those in need Community systems ensure that funds reach grass-roots programmes through on-granting to smaller effective organizations and provide back up and support to expand capacity (Figure 3). They also hold governments, donors and others to account for their financial promises and commitments to communities. The resourcefulness of communities in obtaining funding has often translated into the ability to stretch modest budgets to fulfil a range of needs that not only provides value for money, but also added value for donors and governments. Community responses provide the evidence base Within the HIV response, communities have moved from being the objects of research to being the researchers themselves. Community-driven evidence has informed and continues to inform the development of effective policies and services. Peer-led studies ensure that results reflect actual experience that enhances the quality of data. Figure 3. CBOs mobilize more resources when there is a higher concentration of CBOs per inhabitants KENYA NIGERIA higher concentration of CBOs US$ mobilized per CBO lower concentration of CBOs US$ 7500 mobilized per CBO higher concentration of CBOs US$ mobilized per CBO lower concentration of CBOs US$ 6200 mobilized per CBO Source: Rodriguez-Garcia R, Bonnel R, Wilson D, N Jie N. Investing in communities achieves results: findings from an evaluation of community responses to HIV and AIDS. Washington DC: World Bank; UNAIDS and Stop AIDS Alliance

15 A POP-UP HIV TESTING CLINIC IN CHISAMBA, ZAMBIA Communities deliver 15

16 16 UNAIDS and Stop AIDS Alliance COMMUNITY-BASED HARM REDUCTION PROJECT IN UKRAINE

17 COMMUNITY RESPONSES TO HIV: FOUR MAIN COMPONENTS There are many ways to categorize community-based responses. After a review of categorization methods used by other organizations, UNAIDS chose to use the categories shown in Table 2 (below). This choice does not imply that there is only one typology, but offers one simple way among many of categorizing the comprehensive and multisectoral community-based responses to HIV. In the following pages, each component is individually described in greater detail. Examples of current or recent community responses follow each description to illustrate the type of community actions that can fall under each component. Table 2. Four components of community responses to HIV COMMUNITY RESPONSES TO HIV ADVOCACY, CAMPAIGNING AND PARTICIPATION IN ACCOUNTABILITY COMMUNITY-BASED SERVICE DELIVERY PARTICIPATORY COMMUNITY-BASED RESEARCH COMMUNITY FINANCING Participation in decisionmaking and monitoring mechanisms, including monitoring the enforcement and impact of laws. Securing accountability and fulfilling a watchdog role. Advocacy and campaigning for HIV-specific issues. Advocacy and campaigning on broader human rights. Campaigning across society. HIV prevention. Confidential and voluntary HIV testing and counselling. HIV treatment. Demand creation and service uptake. Care and support. Rights and legal services. Task shifting and task sharing. Training and sensitization of service providers, including health-care personnel, lawmakers and law enforcement officials. Evaluation of programmes and services. Research on human rights, stigma, and discrimination. Improving know your epidemic and know your response. Research on new treatment and prevention technologies. Research to reach key populations with community and rights-based policies and programmes. On-granting (forward granting). Resource mobilization. Community financing initiatives. Communities deliver 17

18 18 UNAIDS and Stop AIDS Alliance ADVOCATES IN BOTSWANA RAISING AWARENESS OF TUBERCULOSIS ISSUES

19 COMPONENT 1: ADVOCACY, CAMPAIGNING AND PARTICIPATION IN ACCOUNTABILITY The most successful advocacy is that which originates in and is driven by those communities that are most affected. Community-based advocacy, campaigning and participation in accountability have changed the landscape of the AIDS response worldwide, and they continue to deliver key changes that enhance the well-being of individuals and their communities. They demonstrate examples of the innovative efforts of communities to negotiate the complex social and political landscapes that define the AIDS response. Community-based advocacy and campaigning have: mobilized millions of individuals; influenced policies and laws; improved access to treatment, care, support, HIV testing and other services; challenged stigma and addressed discrimination; enhanced prevention interventions; and created more enabling environments. These changes have in turn supported the achievement of better health outcomes and human rights. Attention to context is key to successful advocacy, campaigning and participation in accountability, as is a clear focus on the change that is intended and an understanding of what steps are necessary to achieve the desired outcome. Also key to advocacy success is founding actions and leveraging the expertise and knowledge of people in communities most affected. TABLE 3. COMMUNITY-BASED ADVOCACY, CAMPAIGNING AND PARTICIPATION IN ACCOUNTABILITY Participation in decision-making and monitoring mechanisms Resource tracking and monitoring. Meaningful engagement in National AIDS Councils, Country Coordinating Mechanisms, and other monitoring and coordination bodies. Participation in the design, implementation, monitoring and evaluation of policies and programmes, including enforcement and impact of laws. Securing accountability and fulfilling a watchdog role. Advocacy and campaigning on HIV-specific issues Advocacy and campaigning to improve access to services, reduce cost of treatment, overturning restrictive laws and secure funding for HIV services. Advocacy and campaigning on broader human rights Advocacy and campaigning to protect and advance gender equality, the right to health for all, and the rights of key populations, children and young people. Campaigning across society Campaigning to change attitudes, combat stigma and improve levels of HIV-related knowledge and rights literacy. Communities deliver 19

20 ORGANIZATION Positive Vibes and national civil society partners ADVOCACY AND PARTICIPATION IN ACCOUNTABILITY COUNTRY Namibia Coordinated advocacy by civil society results in greater investments for the community responses in the country Namibia has reached upper-middle income status and key donors are phasing out their financial support for HIV. The United States President s Emergency Plan for AIDS Relief (PEPFAR), USAID and Global Fund contributions, which account for about 90% of donor contributions to HIV and AIDS, may decrease by more than 80% in the coming years. While sustainability measures have been taken, without adequate resources to replace those that currently come from international sources, civil society organizations will not be able to continue their critical work. Positive Vibes and eight like-minded civil society organizations used the Strategic Investment Framework to engage in dialogue with the government and demonstrate areas of comparative advantage of civil society in the HIV response, where investments need to go. In August 2012, Positive Vibes organized a workshop on the strategic investment framework for 27 civil society organizations in Namibia. Following the workshop, participants formed a network and a steering group committee to coordinate their engagement with the government. The network developed a civil society position paper that outlined how, using the strategic investment approach, civil society can act as a key government partner in the design and delivery of an effective HIV response. This paper served as the basis for securing and developing a dialogue platform with the government, as well as supporting a coordinated action by civil society on investments for community responses to HIV. As a result of civil society advocacy, the strategic investment approach is now completely integrated into the review process of the National Strategic Framework, and it is considered to be one of the concepts underpinning the process.. In addition, civil society organizations developed a successful Rolling Continuation Channel (RCC) Phase 2 proposal to the Global Fund, using the Strategic Investment Framework; civil society organizations will receive approximately one third of the resulting RCC Phase 2 grant. 20 UNAIDS and Stop AIDS Alliance

21 ORGANIZATION National networks of people living with HIV and civil society organizations in 10 countries Supported by Global Network of People Living with HIV (GNP+) and World AIDS Campaign International ADVOCACY AND PARTICIPATION IN ACCOUNTABILITY PROGRAMME Leadership through accountability COUNTRIES Cameroon, Ethiopia, Kenya, Malawi, Nigeria, the Republic of Moldova, Senegal, South Africa, the United Republic of Tanzania and Zambia Evidence-informed and coordinated civil society advocacy centred on and meaningfully engaging people living with HIV For more information: hivleadership.org The Leadership through Accountability programme ran for five years (2009 to 2013) in 10 countries, funded by the Department for International Development of the United Kingdom of Great Britain and Northern Ireland. The programme was spear-headed by the Global Network of People Living with HIV (GNP+) and World AIDS Campaign International. The two organizations worked together with local partners to implement an evidence-informed, community participatory advocacy model that did the following: National networks of people living with HIV implemented participatory, community-based research by and for people living with HIV. The evidence from that research formed the basis for evidence-informed advocacy by the networks. Civil society partners were supported to get together and identify their priorities, and to coordinate joint advocacy strategies. The evidence from (and meaningful participation of) people living with HIV networks was central to these national civil society advocacy platforms. The national networks of people living with HIV implemented five evidence-gathering methodologies: the People Living with HIV Stigma Index, Human Rights Count!, Criminalisation Scan, GIPA Report Card, and Advancing the Sexual and Reproductive Health and Human Rights of People Living with HIV. The programme enabled national networks of people living with HIV to build a solid evidence base about why it is crucial to achieve universal access and how this can happen in practice through the meaningful participation of people living with HIV. The evidence generated was used to inform national-level priorities and the delivery of HIV programmes with a focus on key issues that were based on the real experiences of people living with HIV. Moreover, the evidence was used to assist governments to deliver coordinated and effective responses to HIV and AIDS. The programme also highlighted the added value of a resourced, well-coordinated civil society that is working with governments to plan, implement, monitor and evaluate programmes that contribute to realizing targets for expanding access to HIV prevention, treatment, care and support without discrimination. Communities deliver 21

22 ORGANIZATION Southern African AIDS Trust (SAT), the Zimbabwe AIDS Network (ZAN) and AIDS Accountability International (AAI) ADVOCACY AND PARTICIPATION IN ACCOUNTABILITY PROGRAMME Leadership through accountability COUNTRY Zimbabwe The Zimbabwe civil society priorities charter results in greater inclusion of community responses in the country s Global Fund Concept Note Source: Zimbabwe civil society priorities charter: an advocacy roadmap for the Global Fund to fight AIDS, Tuberculosis and Malaria New Funding Model. AIDS Accountability and the Ford Foundations; 2014 ( Priorities-Charter.pdf, accessed 27 July 2015) As an early applicant for the HIV grant to the Global Fund New Funding Model in 2013, Zimbabwe had experienced challenges in the meaningful and inclusive engagement of civil society in the Concept Note development process, particularly in the engagement of organizations representing the needs of key affected populations (such as women, young girls and the lesbian, bisexual, gay and transgender (LGBT) community). In March 2013, SAT, ZAN and AAI held together a workshop that brought together 65 participants from 50 different partner organizations in Zimbabwe. Delegates representing a diverse set of constituents travelled from all geographical regions of the country in order to participate. Particular efforts were made to ensure the participation of LGBT communities, people living with HIV, people with disabilities, young women and other key affected populations. This workshop led to the development of the Zimbabwe civil cociety priorities charter, an advocacy roadmap for the Global Fund (March 2014). The Priorities Charter represents a landmark consensus among civil society on priorities for the national response to tuberculosis. These priorities include community needs and recommendations on community actions and CSS. The Charter was used by civil society as an advocacy tool to hold the government and the Global Fund Country Coordinating Mechanism accountable during the Concept Note development process. As a result of the coordinated advocacy by civil society that was led by ZAN, the submitted Concept Note lists CSS as central to the proposed activities, and one of its main objectives is to expand the scope of civil society organizations... supporting community tuberculosis activities beyond the current two organizations, to include 1 National and 11 Provincial [civil society organizations]. 22 UNAIDS and Stop AIDS Alliance

23 ORGANIZATION East Europe and Central Asia Union of People Living with HIV (ECUO) ADVOCACY AND PARTICIPATION IN ACCOUNTABILITY PROGRAMME Regional Advocacy Strategy on access to antiretroviral therapy in eastern Europe and central Asia REGION Eastern Europe and central Asia Successful advocacy to reach universal access to antiretroviral therapy In 2012, Eastern Europe and Central Asia Union of People Living with HIV (ECUO) designed a Regional Advocacy Strategy on access to treatment for everyone who needs it. The goal of the Strategy is 100% state-financed antiretroviral therapy for those who need it in all eastern Europe and central Asia countries by The Regional Advocacy Strategy was translated to the national level (and adapted to each country s context) through National Advocacy Action Plans to amend laws and make governments responsible for public funding for antiretroviral therapy. Between April 2013 and June 2014, a series of press conferences, round tables with officials, petitions, direct advocacy and street actions were run in the following countries: Armenia, Azerbaijan, Belarus, Georgia, the Republic of Moldova, the Russian Federation and Ukraine. Actions were coordinated across countries using the same slogans. ECUO initiated the Thank You for Cooperation award to enlist authorities support on the issue of ensuring antiretroviral therapy for people living with HIV through state budgets, and it lobbied with the Global Fund for to include governmental responsibility for funding antiretroviral therapy. Through this multi-country and multi-level (national, regional and global), coordinated advocacy actions, ECUO s advocacy efforts contributed to the following successes: In Azerbaijan, the 2014 national budget anticipates 100% antiretroviral therapy coverage, including procurement of antiretroviral medicines. In Armenia, the National AIDS programme budget for 2014 has been increased by 14%; in 2013, antiretroviral medicines were included in the list of essential medicines, which in turn ensured that the state needed to ensure in-country availability and accessibility for all citizens living with HIV. By by the order of the Minister of Health of Armenia, 13 May 2013, 17 antiretroviral medicines should be registered for the state budget. In Georgia, the transition plan was developed and approved by the country coordinating mechanism (CCM) to see the transition of provision from Global Fund grant to domestic funding. People living with HIV community representatives became members of the Country Coordinating Mechanism and the Country Coordinating Mechanism Overseeing Committee. Communities deliver 23

24 ORGANIZATION Atlacatl PROGRAMME Life with Dignity (Vida Digna) ADVOCACY AND PARTICIPATION IN ACCOUNTABILITY COUNTRIES El Salvador, expanded to Mexico and central America Ensuring dignity of communities The involvement and leadership of key populations is essential for lasting change in the central America region. Vida Digna employs the methodology of Participatory Community Assessment, along with activities that encourage participants to examine stigma and discrimination at all levels, from the individual to the national. They help participants connect with human rights issues and provide tools to tackle stigma and discrimination through official channels. For example, in one activity, sex workers surveyed members of the public at a local shopping centre about their perceptions of sex work. They then produced a report on the stigma and discrimination they face and used this to inform their advocacy strategies. The participatory assessment for Vida Digna signalled a clear need to support and empower sex workers, people living with HIV, gay men and other men who have sex with men, transgender people and people who inject drugs. The programme has now been successfully implemented in El Salvador by Atlacatl, and it has reached more than 8000 people. Through Vida Digna, Atlacatl has increased its legitimacy regionally and nationally by engaging more deeply with key populations. It has also developed an accredited diploma programme on HIV, stigma and discrimination. Two Vida Digna partner organizations participated in the drafting of a new law on sexual and reproductive health rights to ensure that the rights of transgender women were addressed in El Salvador. Due to the efforts of these organizations, the draft law now refers to issues such as hormone regimes and transgender women s rights to see specialist doctors an important step in encouraging the state to address gender identity issues formally. Colectivo Sol continued to use the Participatory Community Assessment and Vida Digna approach beyond the end of the programme to train more than 60 organizations as part of an HIV prevention community of practice in Mexico. The Vida Digna model is now being further expanded in central America through a US$ 12 million grant implemented by two regional networks, RedTraSex for sex workers and REDLACTRANS for transgender women, with support from Positive Action and the International HIV/AIDS Alliance. 24 UNAIDS and Stop AIDS Alliance

25 ORGANIZATION RedTraSex the Latin America and the Hispanic Caribbean network of sex workers ADVOCACY AND PARTICIPATION IN ACCOUNTABILITY COUNTRIES 14 countries in Latin America and the Caribbean Good practice guide for health systems RedTraSex is a network operating in 15 Latin American and Caribbean countries, consisting of local and national sex worker organizations. Human rights violations against sex workers, the lack of policies and legal frameworks to protect them from violations, widespread stigma and discrimination, and capacity gaps (including in institutional capacities) make this population vulnerable to HIV, violence and other health issues. In February 2012, RedTraSex started a programme to prevent HIV among female sex workers through national and regional advocacy interventions. Three main activities were implemented: advocacy capacities for sex worker rights were built and access to quality health services was promoted (including within policy design, legal framework review and the participation of sex workers in national and regional policy debates to fight against stigma and discrimination); activities aimed at reducing violence, stigma and discrimination were launched; and institutional capacities were developed. Through this approach, RedTraSex reached female sex workers and sensitized 1259 health workers in 14 countries and developed the Good practice guide for health systems for sex workers. Sex workers increased their participation in parliamentary debates and presented a draft bill on sex work in Argentina. The main changes that resulted from these interventions were increased visibility of sex worker issues (at national and regional level through their involvement on the Organization of American States), improved quality of health care for sex workers at health centres and agreements signed with formal health systems. Communities deliver 25

26 26 UNAIDS and Stop AIDS Alliance COMMUNITY TRAINING, CAMBODIA

27 COMPONENT 2: COMMUNITY-BASED SERVICE DELIVERY When coordinated and working in partnership with national health systems, communitybased service provision plays a decisive role in scaling up HIV services by connecting clients, especially people who are marginalized, with services. Community-based service delivery is an important component of the wider delivery of HIV services. Evidence shows that there is a greater impact, in terms of better access and wider coverage, with services that are community-led compared to other types of service provision (18). Evidence also shows that community-based service delivery has better health outcomes (19) and can lead to the rapid scale-up of interventions through demand creation (20). Communities create the demand for services, but they also directly provide those services whether they are medical interventions, social care or legal and human rights-related. Community-based services also humanize the delivery of prevention, treatment, care and support. The actions of communities in providing HIV-related services are particularly noteworthy, as they bring knowledge of the complexities and specifics of lives, rights and needs, enabling access to (and trust from) highly marginalized communities. Community-based services lend expert knowledge combined with lived experience from people living with HIV and key populations to inform and improve health systems service delivery. Given the high levels of stigma and discrimination experienced when accessing health services by people living with HIV and other key populations, the training and sensitization of health-care providers is a critical component of community-based service delivery (21 23). Addressing health, social, psychological and economic issues, including impact mitigation, is the mainstay of most community-based services, and it is done through informal as well as formal services. Communities are diverse, and so are their needs; strong community action is defined, led, implemented and owned by communities with support from civil society, government and other stakeholders. Communities deliver 27